Comp B-Improving the Care and Outcomes of People Living with SB

描述（由申请人提供）：亚拉巴马大学伯明翰分校（UAB）自成立以来一直致力于国家脊柱裂患者登记。疾病预防控制中心认识到登记的必要性和益处，以促进脊柱裂患者医疗保健各个领域的进步，并建立了国家脊柱裂患者登记处。该计划的目标是提高医疗质量，并了解脊柱裂患者的人口统计学和特征。从2008年开始，亚拉巴马儿童医院与亚拉巴马大学伯明翰分校（UAB）和辛辛那提儿童医院与Ground Zero Software的程序员合作，为脊柱裂开发了一个名为Webtracker的诊断特定电子病历（EMR）。Webtracker被设计为可以被诊所普遍使用的脊柱裂EMR，以及作为数据点的存储库，这些数据点将被用作嵌入到EMR中的注册表。UAB随后根据FOA DD 08 -001获得资助;其中包括9家入选患者入组登记研究的研究中心。该资助周期于2011年结束，但遇到了新的资助机会，FOA RFA-DD-11-005，选择UAB继续收集登记研究中纳入的患者人群的纵向数据，并将诊所的新患者添加到登记研究中。截至2014年2月1日，UAB已收集了485名患者的数据，并自2009年以来完成了1，364份年度报告。UAB在入组人数、纵向数据报告数量和入组合格患者数量方面领先于所有登记研究中心，入组合格患者的百分比为99%。UAB致力于继续收集在我们诊所看到的脊柱裂儿童和成人的纵向数据。这些数据将用于提高护理质量， 通过比较参与诊所之间干预措施和结果的差异，确定最佳做法。UAB还打算在过渡后的患者依从性、泌尿外科管理中诊所间治疗的变化（特别是尿动力学检查）以及神经外科管理的变化等方面制定假设。这些研究将使用国家脊柱裂患者登记数据完成。

DESCRIPTION (provided by applicant): The University of Alabama at Birmingham (UAB) has been committed to the National Spina Bifida Patient Registry since its inception. The CDC recognized the need and benefits of a registry to promote advances in all areas of health care for individuals with Spina Bifida and established the National Spina Bifida Patient Registry. The goal of this initiative was to improve the quality of healthcare as well as to gain an understanding of the demographics and characteristics of individuals with Spina Bifida. Beginning in 2008, The Children's Hospital of Alabama with The University of Alabama at Birmingham (UAB) and The Children's Hospital of Cincinnati collaborated with programmers from Ground Zero Software to develop a diagnosis specific electronic medical record (EMR) for Spina Bifida called Webtracker. Webtracker was designed to function as a Spina Bifida EMR that could be used universally by clinics as well as to be the repository for data points that woul be used as the registry which were embedded into to the EMR. UAB was then funded under FOA DD08-001; which consisted of 9 sites that were selected to enroll patients into the registry. This funding cycle ended in 2011 but was met with a new funding opportunity, FOA RFA-DD-11-005 where UAB was selected to continue to collect longitudinal data on the patient population included in the registry as well as to add new patients in the clinic to the registry. As of Februay 1, 2014, UAB has collected data on 485 patients and completed 1,364 annual reports since 2009. UAB has led all registry sites in number of enrollees, number of longitudinal data reports, and the number of eligible patients being enrolled at a percentage of 99% of eligible patients being enrolled. UAB is committed to continue the collection of longitudinal data on children and adults with Spina Bifida seen in our clinics. These data will be used to promote quality of care by determining best practices through comparing differences in interventions and outcomes among participating clinics. UAB also intends to develop hypotheses in the areas of patient compliance after transition, variation of treatment amongst clinics in urological management; specifically urodynamic testing, and variation in neurosurgical management. These studies will be completed using the National Spina Bifida Patient Registry data.